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  • This study, as a secondary analysis of a publicly available, de-identified data set, was determined by the Institutional Review Board of the North Shore-LIJ Health System to be "IRB exempt.” Data were obtained from the 2011 Survey of Pathways to Diagnosis and Services (“Pathways”), a cross sectional, nationally representative survey of the parents and guardians of children with special health care needs (CSHCN) ages 6–17 with a current or past parent-reported diagnosis of ASD, ID, and/or DD. The Pathways survey was conducted by the CDC’s National Center for Health Statistics (NCHS), State and Local Area Integrated Telephone Survey (SLAITS) program. This survey was a follow-up to the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN). Within this sample, 7,572 participants were identified as eligible for Pathways, and 6,090 were randomly chosen for follow-up. Among those that were successfully contacted and confirmed as continuing to meet the Pathways eligibility criteria, telephone interviews were completed for 4,032 respondents. A subset of these participants agreed to complete an additional written survey, called the Self-Administered Questionnaire (SAQ), which was composed of questions from the Strengths and Difficulties Questionnaire (SDQ) and the Children’s Social Behavior Questionnaire (CSBQ). In total, 2,988 SAQs were completed and returned [6]. Elopement was assessed based on four questions about the child’s history of wandering from various locations within the previous twelve months. Respondents were asked to indicate whether their child had wandered off or become lost from their own home; from “someone else’s home”; from a structured program such as “school, day care, or summer camp”; or from “a store, restaurant, playground, campsite, or any other public place.” Responses were coded as “yes,” “no,” “don’t know,” or “refused.” The prevalence of elopement was calculated as the percent of respondents that answered “yes” to at least one of these questions. A fifth, “any home” category was also constructed to include all children who had wandered away from their own home and/or someone else’s home. Analyses were limited to respondents who indicated that their child currently had ASD, ID, and/or DD. Children were assigned to one of three mutually-exclusive condition groups: “ASD-only” (those with current parent-reported ASD without ID or DD); “ASD + ID/DD” (those with current parent-reported ASD and ID and/or DD); and “ID/DD-only” (those with current parent-reported ID and/or DD, without ASD). The prevalence of elopement within the previous 12 months was calculated separately for the ASD-only, ASD+ID/DD, and ID/DD-only groups. Logistic regression analyses were used to compare the odds of elopement across these groups, and to examine associations between elopement and several demographic factors: age, sex, income, race, ethnicity, and household education level. To delineate the clinical correlates of wandering, responses to questions from the CSBQ were analyzed for their association with elopement. The CSBQ is a 49-item questionnaire designed to assess a range of symptoms across the Pervasive Developmental Disorder (PDD) spectrum, including milder manifestations [7]. Questions from the CSBQ are grouped into six subscales: “stereotyped behavior” (8 items), “reduced contact and social interest” (12 items), “orientation problems” (8 items), “difficulties in understanding social information” (7 items), “resistance to change” (3 items), and “behavior/emotions not optimally tuned to the situation” (11 items). Responses to each question are scored on a three-point scale; a response of “0” indicates that the difficulty “does not apply”; “1” indicates that it “sometimes or somewhat applies”; and “2” indicates that it “clearly or often applies.” Scores from individual items are then summed to yield subscale scores. The CSBQ has been shown to have good internal consistency, inter-rater reliability, and test-retest reliability, and has been validated for use in individuals with cognitive impairment [7, 8]. Although the criterion-related validity of the CSBQ has also been shown to be good, it differs from a number of other instruments for assessing ASD in that it is not intended to be used for the purposes of diagnostic classification. Rather, the CSBQ reflects a dimensional view of the autism spectrum and is optimal for use in characterizing the pattern and severity of behaviors associated with ASDs [6, 7, 8]. For this reason, the CSBQ represents an ideal tool for examining the association between elopement and the degree of ASD symptomatology—even among children with “sub-threshold” symptoms that do not meet the criteria for a categorical ASD diagnosis. For the present analysis, t-tests were used to compare mean scores on each subscale between wanderers and non-wanderers in each of the three condition groups. Fifteen items from the CSBQ were identified as being exceptionally relevant to the safety of children who wander, and were thus analyzed individually. These questions focus on the child’s tendency to panic or become angry, their ability to deal with new or unexpected situations, and their awareness of danger, among other qualities. For each of these items, logistic regression analysis was used to compare the odds of indicating that the behavior “clearly or often applies” between wanderers and non-wanderers, after controlling for demographic factors (age, sex, race, ethnicity, household income, and household education level). A final set of analyses characterized the use of wandering prevention measures in this sample. Use of preventive measures was assessed based on two questions. Respondents were asked to indicate whether they had ever 1) added “fences, gates, locks, alarms, or other barriers” to their homes to avert elopement; and, 2) utilized an electronic tracking device to prevent their child from becoming lost. Logistic regression analyses were performed to compare the odds of preventive measure use across the three condition groups (ASD-only, ASD+ID/DD, and ID/DD-only), and to determine whether a history of elopement within the previous year was associated with higher odds of preventive measure use. All analyses were performed using SAS SURVEY procedures available in SAS version 9.04 software. Appropriate weights were applied in order to account for the complex sample design of the Pathways survey. Significance was set at the p < 0.05 level; all reported p-values are two-tailed.
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